Document

Season’s Greetings,

November/December 2005 Transition 1

We welcome articles, graphics, creativewriting, et al. The editors reserve the right toedit and/or withhold material from publication.

BC Coalition of People with Disabilities204-456 W. Broadway,Vancouver, BC V5Y 1R3(604) 875-0188 • TTY (604) 875-8835Fax (604) 875-9227Transition only: [email protected]: [email protected]

We’re glad to see Transition materialrepublished, with credit to “Transition, BCCoalition of People with Disabilities” and theedition date.

Editorial Statement: The views and opinionsexpressed within the pages of Transition arenot necessarily those held by the totalmembership or Board of Directors. Thematerial presented herein is meant to bethought-provoking and to promote dialogue.Transition is a forum to share informationwithin the disability community, and withgovernment and the general public. It is alsoan opportunity for people with disabilities todisplay creative talent.Disclaimer: Any firm or company advertising inTransition is for our readers’ benefit and does notconstitute an endorsement by the BCCPD.

Transition is published six timesa year by the BC Coalition ofPeople with Disabilities.Subscriptions are $20/year.

Founding EditorRichard A. Watson

Editor/LayoutAnn Vrlak

Cover DesignFiona Gamiet

Researcher/ProofreaderEleanor PasholkoJane Dyson

Admin AssistantElena Berry

Alternate FormatsVal StapletonEleanor Pasholko

VolunteerCoordinationJanis Walsh

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Privacy StatementThe BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right to privacy and theprotection of their personal information. The BCCPD is committed to ensuring compliance with British Columbia’sPersonal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personal information itcollects about people and why. It will store information securely and identify who has access to the information itcollects. It will inform people what information will be shared, with whom, and why. BCCPD Privacy Officer: Mei Ng(604) 875-0188; Alternate: Jane Dyson (604) 872-1278; [email protected] Publications Mail Product Sales Agreement No.40051676

featuresEditorial by Laurie Beachell ........................................ 2The future of disability supports in Canada ............. 4Opening up the world through supportsby Jo Dunaway .............................................................. 6Support flexibility allows freedomby Jo Dunaway ............................................................ 12Victory for family caregivers .................................... 16PEADC Progress .......................................................... 18Circles of support by Jo Dunaway ........................... 22Good news on user feesby Christine Gordon..................................................... 26The support of a job coachby Linda Delparte ......................................................... 30

newsWorld AIDS Day 2005 .................................................... 9Access to Health Award winners ............................ 19Court makes landmark ruling on disabilityand immigration .......................................................... 20Hepatitis C Update by Jane Dyson........................... 28The Kids are a hit at the Fringe! ............................... 29

specialIn Memoriam: Barbara Parson ................................. 21

Cover photos byLooking Good Photographic

2 November/December 2005 Transition

The Council of Canadians withDisabilities’ (CCD) applauds

Transition’s two-edition look at disabilitysupports. In fact, a new investment indisability-related supports is CCD’spriority issue. CCD and the CanadianAssociation for Community Living(CACL) are working together on thebest ways to advance this agenda forpeople with disabilities across Canada.The BCCPD has played an importantrole on the provincial level through itswork in identifying gaps in service, aswell as presenting options for reform.

Disability-related supports arecritically important to all people withdisabilities. Yet, too often we think ofthese supports only as technical aids ormobility devices. As this Transitionillustrates, supports also include per-sonal supports or “partnerships” withinterpreters, home support workers,specialized skill trainers, etc. Withoutthese kinds of supports, Canadianswith disabilities cannot pursue aneducation, employment or participatemeaningfully in community life.

Our Vision to Guide aDecade of ChangeOver 10 years, CCD’s goal is toestablish a comprehensive system thatprovides three tiers of resources andsupports for the disability community:people with disabilities, their familiesand communities. We believe that theinvestment of resources for disabilitysupports at all these levels will havethe greatest impact on people withdisabilities’ independence andparticipation in our communities.

The Challenge There are many challenges in bringingthis vision to reality. Here is the keychallenge we see and how we canaddress it.

• Limitations in disability supportsand services are usually defined asservice issues: that there is simplya lack of supports and services.Framing the issue this way as-sumes the service system is inplace and all that is needed is morefunding. In fact, what is needed isan investment strategy by all levelsof government to deliver on thehuman rights and citizenship visionof In Unison (see sidebar page 3).

• The challenge is to create a com-prehensive system that gives peo-ple with disabilities, families andcommunities the resources theyneed to create, arrange, and mobi-lize needed services and supports.

• For federal and provincial/territorialgovernments, the challenge is todesign a system of transfers toindividuals, families and communi-ties that will deliver the disabilitysupports needed to build an inclu-sive and accessible Canada.

Elements of aComprehensive SystemSpecifically, here are some ways alllevels of government can work tocreate this comprehensive system ofresources for disability supports:• Transfers to individuals to ensure

they have:- Needed basic income- Income to purchase supports

(both tax deductions and directfunding for disability supports)

• Transfers to family caregivers toensure they can access neededhome accommodations and disabil-ity supports, build bridges to com-munities for family members withdisabilities, arrange paid leave fromemployment to provide care, andhave respite to safeguard their ownhealth.

• Transfers to communities to trans-form outmoded service systems,

by Laurie Beachell


create needed supports, providepeople with disabilities and familiesinformation and coordination sup-ports, better link formal and informalservices, and establish accessiblephysical infrastructure and transpor-tation systems.

• Transfers to the disability commu-nity to engage in a process oftransforming communities, policiesand practices to further expand thesystem of quality supports.These transfers and the accompa-

nying program commitments are notthe responsibility of one level of gov-ernment on its own. Federal and pro-vincial/territorial governments need todevelop a joint, long-term investmentstrategy.

Here are the first steps CCD hasidentified for adapting various agree-ments and relationships betweenlevels of government.

1. Redesign Canada’s Multi-lateralFramework Agreement as a fundingmechanism by which the federalgovernment can transfer funding toprovinces and territories for increas-ing disability supports to individuals,families and communities.

2. Make the Labour Market Develop-ment Agreements (LMDAs) themain vehicle for investing in employ-ment for people with disabilities.This will require provinces to negoti-ate explicit provisions in the LMDAsfor investing in employment forpeople with disabilities.

3. Build a disability component intoother multi-lateral initiatives, forexample, cities and communities,post-secondary, early learning andchildcare, Aboriginal strategy andseniors.

4. Commit to a long-term agenda toaddress the exclusion and povertyof people with disabilities through

financial arrangements under Cana-da’s Social Transfer to Provinces andTerritories.

5. Ensure the emerging NationalCaregiver Agenda, which hopes toaddress respite care, tax benefitsand employment insurance forcaregivers, complements ratherthan replaces a disability agenda.Our vision is that people with

disabilities will then benefit from Cana-dian society in ways that are equal toother Canadians. The huge gap ineducation, literacy, income, employ-ment, safety and social and economicwell-being will close.

Laurie Beachell is Executive Director of theCouncil of Canadians with Disabilities �

in unisonIn this edition, a few writers refer to areport, In Unison: A Canadian Approachto Disability Issues–a joint federal,provincial and territorial vision for fullparticipation prepared in 2000.

The report’s Preamble says it is in-tended to promote the full integrationof people with disabilities in Canadaand that “there is much scope toimprove the current patchwork offederal, provincial and territorialbenefits and services. Work needs tobe done at both levels of governmentto reduce the fragmentation of oursupports and services. More effectiveand coordinated programs would betterserve Canadians with disabilities andthe country as a whole.”

The full In Unison document is availableat: http://socialunion.gc.ca/pwd/unison/unison_e.html.


The theme of this Transition, and ourlast edition on disability supports, isthat these supports are a prerequisiteto full participation in all aspects ofCanadian society. This participationwas clearly envisioned in the In Unisonframework adopted in 2000 by federal,provincial and territorial ministers.National organizations such as theCouncil of Canadians with Disabilities(CCD) and the Canadian Association forCommunity Living (CACL), andprovincial organizations such as theBCCPD are working to raise public andpolitical awareness about the pressingneed for disability supports. We arelobbying the federal government toadopt an action plan to address thisneed.

On October 19, 2005, BCCPD andBCACL (BC Association for CommunityLiving) co-hosted a meeting for com-munity groups where Dr. MichaelPrince from the University of Victoriamade a presentation on disabilitysupports options. Dr. Prince has beenworking on disability issues for thepast 15 years with a focus in recentyears on the availability andaffordability of disability services andsupports. The meeting was an opportu-nity to hear about the ongoing discus-sions around a disability strategy. Dr.Prince had this to say about four possi-ble options for the future of disabilitysupports in Canada.

Option 1New federal transfers to provincesand territories for supportsUnder this option, the federalgovernment could use the existingprogram of transfers to the provincesand ramp up the amount over theyears. According to Dr. Prince, theprovinces, who would decide how touse the funds, are more enthusiasticabout this option than the federalgovernment which has concerns aboutaccountability. However, he said, thisfactor could be addressed by providingfederal funds directly to disabilitygroups within the community to workwith the provincial government.

Option 2New federal refundable tax credit forpeople with severe disabilitiesThis option involves a tax credit thatwould go directly to people with severedisabilities to help defray the costs ofsupports. However, Dr. Prince pointedout, tax benefits are of little use tomost people with disabilities who don’thave taxable income.

Option 3Earned income supplement for lowincome workers with disabilitiesThis option is a refundable tax credit forpeople with disabilities who are earninga low income. Dr. Prince has not seenmuch interest in this option and, hesaid, some of the other options wouldhave to be in place as well for it towork.

The future of disability supports in CanadaBCCPD and BCACL co-host a meeting on creative options.

How can we

Dr. Prince hasbeen workingon disabilityissues for thepast 15 yearswith a focus inrecent years onavailability andaffordability ofdisabilityservices andsupports.


Option 4A new Canadian disability incomeprogram with reinvestment byprovinces and territories intosupportsDr. Prince described this option as asystem whereby an eligible person witha disability would receive a monthlycheque for $1000 from the federalgovernment. The program would cost$4 billion a year, he said, but at thesame time it would remove a largenumber of people from other disabilityprograms.

Dr. Prince said that it is possiblethat as many as 500,000 people acrossCanada would qualify for the programand be lifted off income assistance,freeing up money for provinces toreinvest in more supports and services.Since this program would be Canada-wide, a participant would not be cut offby moving to another area of the coun-try.

According to Dr. Prince, Options 1and 4 hold the most promise for aworkable strategy for the disabilitycommunity. But, he said, governmentsand politicians must be educated to letgo of their fascination with the taxsystem and recognize expenditureprograms as the most effective compo-nent of a disability supports strategy.

While, in his opinion, the Canadiandisability income program envisioned inOption 4 is the most challenging of theoptions, he also thinks that it is themost exciting and promising. It ispossible, said Dr. Prince, to work to-

ward this long term goal while puttingOption 1 into action right away. Thefederal transfer system is already inplace and all that is required is for thefederal government to increase theamount of transferred funds in order toimprove existing disability supports andadd new ones.

According to Dr. Prince, this couldbe done immediately at the instigationof the federal or provincial government.The BC government’s expression of aGolden Decade that, among otherthings, would see this province withthe best supports in the country, is anopportunity for the disability commu-nity to encourage the government tomove on this issue. �

BCCPD ResourcesBCCPD has been working for sometime around the issue of disabilitysupports, concentrating on twoareas: equipment and personalsupports. This focus is reflected in atwo-part Transition series. Our lastedition, September/October 2005,was dedicated to Disability Supports: Equipment &Assistive Devices while this issue looks at personalsupports and partnerships.

A video of the presentation by Dr. Prince and thediscussion that followed is available in VHS or DVDformat from BCCPD for the cost of the postage. ContactVal Stapleton at BCCPD at 604-875-0188 or by email [email protected].


Eddy Morten and interpreter BrendaErlandson sit facing one another and,as their hands move in an intricatedance, the words pour out. For mybenefit, Brenda speaks them aloud.She is interpreting through tactilesigning for Eddy who is deaf-blind.

Eddy was familiar with this way ofspeaking before he needed it himself–his older brother was deaf-blind frombirth and this was how they communi-cated. Eddy, who has Usher syndrome

type 1, was born deaf, but did notbegin to lose his vision until the age ofeight. The retina of his left eye de-tached, leaving him with sight only inhis right eye. His vision slowly deterio-rated and almost disappeared by thetime he was 10 or 11. Many years ago,surgery to repair his left eye wasunsuccessful. At about age 20, hebegan to develop cataracts which hehad removed two years ago.

“It’s better now,” says Eddy.“Before the cataracts were removed, itwas like looking through the windshieldof a car that has been outside all night– all foggy and fuzzy. But the cataractsurgery cleared away a lot of the fog.Now it’s like looking through a tunnel–avery narrow tunnel, but clearer.” He cansee best in the evening light and wearsdark glasses to ward off glare in brightsunshine.

Eddy is an athletic, confident andindependent person who likes to beout doing things. Whether it’s a longwalk or a trip to the grocery store or

Brenda, and the otherinterpreters Eddy callson, are his personalsupports–supports whothink and breathe, ratherthan other disabilitysupports like computersor hearing aids.

Opening up the world by Jo Dunaway


attending a meeting or workshop, hisconstant companion for the last sevenyears has been Harmony, a friendlyblack Labrador. “We’re always to-gether,” says Eddy. “She’s a trainedguide dog and she’s very hardworking.It’s her job to keep me safe.”

But when they are at home,Harmony is off duty–a big loveable petwho greets guests and plays withEddy’s two young sons when theyvisit.

Until about 15 years ago, Eddycommunicated primarily through visualuse of American Sign Language. “Ineeded to be quite a distance from theother person to be able to see theirhand movements. With tactile signing,it’s the opposite–I have to be veryclose to the person. It’s an intimateway of talking.”

Although tactile signing makesuse of American Sign Language, thespeakers are actually feeling the shapeof the signs in the movement of eachothers’ fingers. It’s a technique thattakes getting used to.

“Some people aren’t comfortablewith such close contact,” says Eddy.“But, once they get comfortable, it’sfine.”

Eddy says there is also no denyingthat some people are just a better fittogether. He and Brenda have workedtogether and been friends for morethan nine years and their conversationis rapid and fluid. “Very rapid!” laughsBrenda. “Eddy is a fast talker.”

He is also a humorous, animatedspeaker, enhancing his signing with

Tactile signingIn tactile or hands-on signing, the receiver’s hands are placedlightly on the backs of the hands of the signer to read thesigns through touch and movement. The sign language usedis often a slightly modified version of the local Deaf Signlanguage. This is especially the case when used by peoplewith Usher syndrome who may have first lost their hearingand later their sight. Non-manual elements of the deaf signlanguage, such as facial expressions, have to be substitutedwith information produced manually.

body language and gestures, as well as smiles and otherfacial expressions.

Brenda, and the other interpreters Eddy calls on, are hispersonal supports–supports who think and breathe, ratherthan other disability supports like computers or hearing aids.

Eddy will book an interpreter when he attends a work-shop or a meeting of the BC Association of the Deaf-Blind.Interpreting in such a setting is intense–physical, visual andauditory information need to be interpreted. So two or moreinterpreters will usually spell each other off. An intervenormay also be there to guide Eddy to his destination, describehis surroundings for him, and help him do things like locaterefreshments and washrooms. Intervenors do interpret, butthey don’t do the intensive interpreting needed for some-thing like this interview.

continued on next page

In addition to his personal sup-ports, Eddy also has the help of sometechnology. Many bank machines, forexample, now have Braille on thekeypads, so he can perform his owntransactions. He frequently carries his


own device about half the size of alaptop with both a regular and a Braillekeyboard. In addition to holdingdownloaded information from hiscomputer when he is at meetings ortravelling, it can be used to communi-cate with a sighted person throughwritten messages. He also communi-cates via email by using a program thatgreatly increases the size of the letter-ing or another program that converts itto Braille.

All of these disability supportsenable Eddy to live as independently aspossible–which he has always tried todo.

He has always been involved inathletics and by high school had de-cided that he was going to be anOlympic wrestler. He participated inthe Paralympic Games in 1980 and1984. Then wrestling was dropped as aParalympic event but, undeterred, Eddyswitched to judo. His thrice-weeklytraining sessions were with sightedand hearing athletes, so Brenda ac-companied him to relay visual signsand instructions given by the coach.

Eddy won a Bronze Medal in judo atthe 1988 Paralympic Games in Seoul.

A rotator cuff injury put an end tojudo, but Eddy continues to run, liftweights, work on a stationary bike, andwalk with friends or with Harmony.

“I can see a little bit, so I’m confi-dent on my own,” he says. However,not everyone is so Eddy helps out. Heworks with a program to help mem-bers of the small deaf-blind communityget into the broader community andbecome more independent. He helpstrain intervenors and guides, andcoordinates meetings between indi-viduals and intervenors. “It’s a verypersonal interaction, so it doesn’talways work between two people.That’s OK–if it’s not a good match wejust try a different one.”

Eddy says that something assimple as a walk with a friend orintervenor can open up the worldaround a deaf-blind person. “They cantell you how the mountains look thatday, describe your surroundings, tellyou what the other people are doing–so you are part of it.” �

Eddy workswith aprogram tohelp membersof the smalldeaf-blindcommunityget into thebroadercommunityand becomemoreindependent.

Opening up, continued from previous page

Photos by Looking GoodPhotographic


While World AIDS Day is an an-nual event, it is our hope that theawareness and understanding createdby WAD activities has a lasting impact.HIV/AIDS continues to devastatefamilies around the world.

Prevention of HIV is the solutionto the AIDS crisis and you can play apart. Contact us for free copies of ourHIV prevention booklets to share withothers who may feel uncomfortableasking for information about HIV andsexual health. HIV affects everyone,including people with disabilities. �

BCCPD UPDATE

World AIDS Day 2005World AIDS Day (WAD) is markedaround the world on December 1st.The BCCPD’s AIDS & Disability ActionProgram once again partnered with BCseniors groups and disability centres atcolleges and universities. Each year,we distribute World AIDS Day pins,postcards and our reader-friendly HIVprevention booklets for informationdisplays. This year we were pleased topromote two new posters designed byartist carol weaver–a BCCPD posterand a beautiful new poster celebratingseniors and elders–along with ourannual World AIDS Day poster.

Some examples of other WorldAIDS Day activities around the globeinclude:

• Shopping centre displays anddistribution of condoms in pubs inAustralia

• “Wear a Red Shirt” campaign toshow support for WAD in Barba-dos

• Solidarity march, slide show andquilt ceremony in Belgium

• Six thousand letters mailed to cityhalls in Brazil to encourage WADactivities

• Candlelight procession throughrefugee camps in Ethiopia

• First Red Ribbon Film Festival inKorea

• Conference on HIV preventionamong young people living “out-side the home” in Latvia

• Parade, HIV game show andpoem-writing event in the Solo-mon Islands

• Mural by children illustrating theirexperience of HIV and AIDS inSwitzerland

aidsfacts� every minute–five people die

of AIDS

� every day– 8,000 people dieof AIDS

� in 2004–five million peoplewere newly infected with HIV,the virus that causes AIDS

� right now–40 million peopleare living with HIV

Statistics from www.worldaidsday.org


Today’s seniors are living longer,healthier and more independently.

They make up 14 per cent of BC’spopulation and that number isexpected to increase to 23 per cent by2013.

In response to this ongoinggrowth, the provincial government hasdoubled its Shelter Aid for ElderlyRenters (SAFER) funding to help moreBC seniors meet the cost of marketrents. SAFER provides direct cashassistance to BC residents aged 60and over with low to moderate in-comes who pay more than 30 per centof their gross income on rent. This isthe first funding increase to the SAFERbudget since 1990, with $16.6 millionin total funding this year and $34.1million in 2006/07.

Approximately 12,000 seniorscurrently receive monthly subsidiesunder SAFER, administered by theprovincial Crown agency BC Housing.That number is expected to grow tomore than 19,000 with the expandedbenefits.

BC Housing pays a portion of thedifference between 30 per cent ofincome and the lesser of the actualrent paid or the rent ceiling. Province-wide rent ceilings were increased onOctober 1, 2005, to $610 for singlesand $665 for couples, up from $520and $575 respectively. A senior with$12,500 in annual income who pays$500 rent a month will now receiveapproximately $169 a month onSAFER, instead of $105 a month underthe previous criteria.

There are now separate, higherrent ceilings for residents in theGreater Vancouver Regional District(GVRD): $700 for singles and $755 forcouples. Also, seniors who pay sub-stantive “pad rental fees” in owner-occupied manufactured homes arenow eligible for SAFER benefits.

Val MacDonald, Executive Direc-tor of the Seniors Housing InformationProgram, a non-profit organization forseniors who live or wish to live in theLower Mainland, applauded the fund-ing increase. “We’re very pleased withthe government’s decision to increasethe rent ceilings, and for recognizingthat rents in the GVRD are higher thanaverages elsewhere in the province,”said MacDonald. “This will help im-prove the financial situation for thou-sands of lower income seniors.”

SAFER applicants must haveresided in BC for a full 12 months priorto their application, and lived in Canadafor at least 10 continuous years as anadult. Anyone who receives provincialincome assistance, excluding theMedical Services Plan, is ineligible forSAFER benefits, as are individuals wholive in subsidized housing, co-operativehousing or residential care facilitiesfunded by the Ministry of Health.

BC Housing has sent informationabout the increased SAFER benefits toall current recipients, making reapplica-tion unnecessary. For new applicants,information and application forms areavailable from BC Housing at 604-433-2218 in the Lower Mainland, 1-800-257-7756 province-wide or online atwww.bchousing.org �

A D V E R T I S E R F E AT U R E

Shelter Aid for Elderly Renters Funding Increases



Like all busy executives, JohnNeumann has a full day that oftenextends into an evening meeting orevent. And, like all busy executives, herelies on organization and planning toget it done. But for John, ExecutiveDirector of the North Shore DisabilityResource Centre (NSDRC), theplanning and organization have anadded dimension–managing hispersonal supports.

In 1973, when he was 21 yearsold, a motor vehicle accident left Johnwith C5-6 quadriplegia. He spent thenext six months in Vancouver GeneralHospital and the following 18 monthsin GF Strong Rehab Centre.

“They kept you in for a long timein those days,” says John. “The entiresecond and third floors at GF Strongwere for quads.”

After being discharged from GFStrong, John moved into a renovatedbasement in his parents’ home andresumed his studies at Simon FraserUniversity. In 1981, John decided tovolunteer some time with what wasthen called the North Shore Associa-tion for the Physically Handicapped.What began as “just answering thephones” grew into a job when Execu-tive Director Gloria Brando initiated aproject to provide affordable housingfor people with disabilities on theNorth Shore. John moved into thesecond group home that was eventu-ally built and administered by theassociation which had become theNorth Shore Disability Resource Cen-tre.

Soon after, John met Fiona Lewisand the couple moved into an apart-ment near Capilano College. In 1995,they moved to their present home inLynn Valley, just “a four-minute wheelfrom work” for John.

The NSDRC split into two pro-grams and in 2001 John became theExecutive Director of one program:

John Neumann, Executive Director of the

North Shore Disability Resource Centre,

spoke with Transition about how his

personal supports allow him to have a full

life of work and play ~ by Jo Dunaway

Support flexibilityallows freedom


non-contracted services such as advo-cacy, outreach and information.

Throughout these years, Johnneeded some disability supports toenable him to meet his growing re-sponsibilities. When John lived in hisparents’ basement, he received helpfrom home care nurses and relied onhis parents to get him up in the morn-ing and put him to bed at night.

“It puts a lot of restrictions onyour life,” John remembers. “You haveto go through an agency to make anychanges in times or personnel. It alldepends on the agency’s schedule. It’spretty certain that you’re not going tobe going to bed at the time that youchoose.”

John says that, “In the first fewyears we were together, Fiona helpedme get to bed because there was noway we could get a worker to come inwhen I wanted them. But that’s nothealthy for an adult relationship,” Johnsays. “And she has her own full-timejob and responsibilities.”

A turning point for John came in1994 with the development of Choicein Supports for Independent Living(CSIL). “CSIL started as a pilot projectof the Ministry of Health in 1993 andhas been going ever since. It gives youcontrol over how you use the homesupport hours and services you get.”

With CSIL, John signed a contractwith Vancouver Coastal Health (VCH).An assessment determined that hewas entitled to 120 hours of personalsupport a month, funds were depos-ited directly into his bank account andthe ball was in his court.

“So, I’m now an employer with acontract with VCH. I interviewed andchose my workers. They are my em-ployees and I do the hiring, firing,scheduling and paying. It’s up to me toarrange my personal supports to suitmy own circumstances and schedule.”

Meet CSILChoice in Supports for Independent Living (CSIL) allowsindividuals direct funding to buy the personal support serv-ices they need, instead of the money going to agencies. Theperson then hires their own attendants, and manages andtailors the services to meet their own needs.

CSIL has two decision-making frameworks or phases: inIndependent Management (Phase 1), the person hasresponsibility for managing their own funding and supports.With the Client Support Group (Phase 2), the person isnot able to direct their own care. Instead, a small group offamily and friends form a client support group. The groupmanages the funding and supports in collaboration with theperson.

CSIL has been hugely successful with the people whohave been able to access it. The availability of the programprovince-wide is an ongoing campaign for BCCPD and others.

For more information on CSIL, visit BCCPD’s IndividualizedFunding Web-Based Resource Centre at www.bccpd.bc.ca,Ongoing Programs to see these downloadable PDF resources:

Getting Started on CSIL - 17 pagesGuide to Individualized Funding - 95 pagesHiring Personal Attendants - 37 pagesThe Voice of the Cerebral Palsied of Greater Vancou-

ver has also prepared a CSIL Handbook. Contact VCP at phone604-874-1741, between 12 and 4 pm, fax 604-874-1746, oremail [email protected].


He has three workers–two regular workers and a reliefbackup. Two of the workers have been with him more thantwo and a half years and he is glad for it. “Stability is soimportant. I don’t want to have to constantly find and trainnew people and establish new relationships. It’s not just myhome that they’re in, it’s Fiona’s home too, so it’s importantthat we all work well together.”

John manages his support creatively and carefully. His120 hours a month equal about four hours a day, split be-tween morning and evening. Most days begin at 7:30 a.m.when one of his workers arrives to help him get up, showerand dress, and makes him coffee and breakfast. By 9 a.m.,


he has wheeledto work where hisoffice is set up tomake the bestuse of supportequipment anddevices. “I’vebeen using voicerecognition com-puter software fora long time.”

John’s needsin the eveningsare more variedthan in the morn-ings. “Everyevening in theweek can bedifferent depend-ing on what I have

on–a meeting or a social function ormaybe a football game. And I don’talways know in advance exactly when Iwill be finished. So flexibility in myworkers is a big issue. I call when I’mon my way home and my workermeets me there and helps me getready for bed.”

The end result of having this kindof support is life-changing. John iscertain that, “I couldn’t do the job Ihave or lead the life I do if it weren’t forthe CSIL program. I just wouldn’t havethe time or the energy or the flexibilityin how I use my personal supports. Thislevels the playing field for me,” he says.

“I know some other quads whoare also with CSIL and who work fulltime and do a lot of things. Some of

them are a lot more adventurous thanme and are out and about 18 hours aday. There is a range of difference infunctionality among quads and thiskind of disability supports programallows for that difference. It’s what weneed.”

John knows he is fortunate tohave the level of technical and personalsupport he does.

“I work in the field so I know howto go about finding what I need tomake my life work for me. I know howdifficult it is otherwise,” he says. “Iremember what it was like when I washaving to deal with the bureaucraticprocess to try to get a piece of equip-ment that I needed. It’s long and in-volved and it can make you lead a veryrestricted life–and that’s not healthy.”

“It’s very difficult if you don’tknow what’s available out there andhow to find it,” John says. “CSIL isprovince-wide and there is also a Phase2 for people who need more help inmanaging their affairs.

However, some case workershaven’t even heard of CSIL and Johnwants to see that change. “Part of myjob is advocating for people who arestuck in the system, to try to expeditethe services and supports they need. Iknow something for sure–once aperson with a disability has an advo-cate the bureaucracies treat themdifferently. They have someone whoknows the system and what theyshould be able to access and they havesomeone watching the process.”

And he is intent on improvingservices and disability supports so the“playing field” can be levelled foreveryone. “CSIL is a great program. Itchanged my life. But the level of fund-ing from the Ministry of Health to theHealth Region to CSIL hasn’t changedsince 1994. It’s not keeping pace.That’s something we are working on.” �

“I couldn’tdo the jobI have orlead thelife I do if itweren’t forthe CSILprogram.”

Creative use, continued from previous page


The BC Coalition of People with Disabilities was founded upon the belief that:• people with disabilities want and are entitled to equal opportunities in all the activities and

privileges that other Canadians take for granted,• full inclusion of people with disabilities within our communities is a fundamental necessity for a

diverse, productive and economically vibrant social environment, and• people with disabilities have the right to expect equality, fair treatment and respect.

Because of these beliefs, the purposes of the BC Coalition of People with Disabilities are:• to use education, advocacy and special projects to work toward the dissolution of the physical,

attitudinal and systemic barriers in our society that deny us equal opportunities,• to provide a coherent voice for the cross-disability communities in BC,• to share information with and support other self-help disability organizations with common goals,

and• to carry out our mission and projects within a self-help model.

�Membership FormI accept your invitation to join the BC Coalition of People with Disabilities and enclose my MembershipFee of $12 (groups and individuals). I am also sending along a tax-deductible donation of $ _____________.BCCPD has a charitable tax number; donations over $10 are tax deductible.

City ____________________ P. Code____________

Phone _____________ Email __________________

Please return your payment with this form, to:BCCPD, 204-456 W. Broadway, Vancouver, BCV5Y 1R3. We thank you for your support.

Voting members are people with disabilities andself-help groups where at least 50% of membershave a disability. Other individuals and groups arenon-voting members.

Mission Statement

The BC Coalition of People with Disabilities is a province-wide, non-profit organization run by and forpeople with disabilities. We are an umbrella group representing people with all disabilities and ourstrength comes from membership support. On behalf of people with disabilities in BC, we willcontinue striving to fulfill our Mission Statement.

Your Membership is Valuable

� New membership or � Renewal

� Voting Member or � Non-voting Member

Name ________________________________________

Organization __________________________________

Address ______________________________________

______________________________________________

Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds anindividual’s right to privacy and the protection of their personal information. The BCCPD is committed toensuring compliance with British Columbia’s Personal Information and Protection of Privacy Act (PIPA). TheBCCPD will inform people what personal information it collects about people and why. It will store informa-tion securely and identify who has access to the information it collects. It will inform people what informationwill be shared, with whom, and why. BCCPD Privacy Officer: Mei Ng (604) 875-0188; Alternate: Jane Dyson(604) 872-1278; [email protected]


Ken LagasseChartered AccountantThe Regional Accounting Firm of KenLagasse Chartered Accountant(KLCA) has for over 30 years focusedon helping small and medium sizedbusinesses and business profession-als reduce their tax burden. It takesgenuine concern and effort to monitora client’s business activities and tocontinually define and achieve thebest tax position for them.

This attitude has not only pre-vailed, but has been enhanced by thefirm’s recent creation of the Medical/Disability Tax Solutions Division. Afterhelping hundreds of clients qualify fordisability tax credits and refunds, it isclear that the combined medical andtax experience of the firm is uniqueand effective.

The firm has learned that aware-ness is just a small part of the processof ensuring that all people with dis-abilities receive all the disability taxcredits they are entitled to. Surprisingfactors come into play. The lives ofpeople with disabilities are full ofchallenges, but taxes are often onechallenge too many. The firm of KLCAwill answer that challenge for you.

Ken Lagasse Chartered Ac-countant, Regional Accounting Firm(Vancouver, Ottawa, Toronto). Van-couver Office 395-3665 Kingsway (NWcorner of Boundary Road). Call TollFree 1-866-829-4446; Lower MainlandResidents call 604-629-1919.www.taxwise.ca/taxaid.

Victory for family caregiversThis month, a seven-year legal battleconcerning peoplewith disabilities andtheir ability to payfamily caregiversended in favour offamilies. Earlier this

year, Transition carried a story onCheryl Hutchinson and her father whobrought a Human Rights case againstthe Ministry of Health in 2001. Theyalleged discrimination by the Ministrybecause it refused to allow familymembers to be paid as caregiversunder the Choice in Supports forIndependent Living (CSIL) program. TheHuman Rights tribunal ruled in Cheryl’sfavour in 2004 and awarded her father,Philip, damages and ordered theprovincial government to change itspolicy to allow family members to bepaid when they are the mostappropriate caregivers.

Though the government appealedthe decision, the BC Supreme Courtupheld the Human Rights Tribunalruling. Surprisingly, the province did notappeal the second ruling. This meansthat the government will now have tochange its policy to allow “exceptions”so family caregivers may in somecases be paid to care for their lovedones in their own home.

It has been a long, tiring fight forCheryl and her father Philip. Theirvictory will allow other families accessto financial support to care for theirloved ones. Our thanks to them bothand we wish them well.!�

This means that the governmentwill have to change its policy toallow “exceptions” so familycaregivers may in some casesbe paid to care for their lovedones in their own home.

A D V E R T I S E R F E AT U R E


Call Toll Free 1-866-829-4446 • Lower Mainland Residents call 604-629-1919

What you need to know� Tax legislation and qualifying

requirements are now muchmore considerate of people withdisabilities and their caregivers,however, many people are still misinformedabout their eligibility for Disability Tax Credits(DTCs).

� Anyone with prolonged and marked restrictionson their daily activities should investigate theireligibility for unclaimed tax benefits.

� Many people fail to establish eligibility for taxcredits and refunds because they lack profes-sional assistance. This assistance is crucial formaximum results - particularly where familymembers are involved.

� Most people with low incomes can transfereligible disability tax credits (refunds) to a familymember who pays taxes.

� Age and whether you can work is not a factor forqualifying.

� Children can qualify for DTCs, and benefits,including refunds, can accrue to their parents.

� Many DTC applications are denied by CRA andfinancial results are not maximized for a varietyof technical reasons.

� Tax refund claims can apply up to 10 yearsretroactively for eligible applicants.

In a self-assessing system you have to know whatto ask for and how to ask for it.

Ask us for a free tax review and find outwhat you may be missing

Finally, there is a service where experienced andconcerned accounting professionals will review yourmedical and tax situations to clarify your options anddetermine if you qualify for any Disability Tax Credits.This service extends to family and caregivers. The taxreview can be initiated by you or a family member.There is no risk, obligation or fee for the tax review. Donot hesitate to take action. Results can be veryrewarding.

How to obtain a free tax review• For a telephone review or personal interview call

Toll Free 1-866-829-4446 or 604-629-1919 in theLower Mainland.

• Visit www.taxwise.ca/taxaid to complete andsubmit a simple profile form. Look for the “OnlineTax Review” link.

What our clients have said“Your work was bang on and it was a real comfort tohave such competent service. I am very pleased withthe results.” P. Latour“I want to thank you very much for your diligence andvery hard work. That [re]fund put us on cloud nine. Ourgratitude goes out big time.” O. Stefanik

Attention: Organizations that assist people withdisabilities. Call us to arrange for a free Tax Reduc-tion Clinic for your members. We have worked withmany organizations.

What is the Price of Not Knowing?Many people with disabilities (and their caregivers) are missing out

on valuable disability tax credits and significant refunds.

Ken Lagasse Chartered Accountant • Regional Accounting Firm (Vancouver, Ottawa, Toronto)Vancouver Office 395-3665 Kingsway NW corner of Boundary Rd. • www.taxwise.ca/taxaid


In the last issue of Transition, wereported on the efforts that werebeing made by the Provincial

Equipment and Assistive DevicesCommittee (PEADC) to convincegovernment to develop a provincialprogram that would meet the needs ofBritish Columbians for these essentialdisability supports. PEADC consists of26 organizations that have beenworking together over the last 2 yearsto identify the need and to proposesolutions to this urgent situation.

On October 20, 2005 PEADCrepresentatives met with the Ministerof Employment and Income Assist-ance, Claude Richmond, to brief him onthe extent of the problem in BritishColumbia. Minister Richmond re-sponded quickly and positively toPEADC’s concerns and agreed that thetime had come in British Columbia totake action on the fragmentation andunder-funding that has too often deniedpeople with disabilities the equipmentand devices that they need to partici-pate in the life of the province.

The Minister endorsed the idea ofa joint community-government Steer-ing Committee to develop a frameworkfor a provincial program. He also urgedPEADC to make a submission to theStanding Committee on Finance andGovernment Services in order tostrengthen support in the Legislaturefor the message that equipment andassistive devices should have a highpriority for funding.

Since that meeting, events havebeen moving rapidly. PEADC made a

submission to the Standing Committeeon Finance and Government Serviceson October 21, 2005, urging an in-crease of $35 million in funding inorder to bring British Columbia’sspending more into line with that inother provinces. Andrew Wharton, theAssistant Deputy Minister of Employ-ment and Income Assistance, met withPEADC on October 26, 2005 to dis-cuss its participation on the DisabilitySupports Program Working Group andmeetings are currently underway togain the participation of other minis-tries: Health, Education, AdvancedEducation and Children and FamilyDevelopment, all of whom have equip-ment and assistive devices programs.

On the community side, PEADC isexpanding its membership to ensurethe best possible representation fromthe community of people with disabili-ties and is examining ways to enabletransparency and accountability in itsrole on the Steering Committee. De-signing a provincial framework forequipment and assistive devices thatmerges the programs of many minis-tries and operates within a vision of fullparticipation for people with disabilitiesis a big responsibility and PEADC istaking this responsibility seriously.These recent developments signify areal breakthrough in what has been adecade-long effort to document theproblem. Now it looks as if the com-munity of people with disabilities isgoing to be part of the solution. Transi-tion will keep you posted on PEADC’sprogress in upcoming editions. �

The Ministerendorsed theidea of a jointcommunity-governmentSteeringCommittee todevelop aframework fora provincialprogram.

PEADC ProgressProvincial coalition makes headway on equipment and devices.


BCCPD UPDATE

Access to HealthAward WinnersThe Health Literacy Network isdelighted to announce the winners ofthis year’s Access to Health awards.Each October, we ask people withdisabilities living in BC to nominate aperson who has given extraordinaryservice in: 1) the health care categoryor 2) the community agency category.

The 2005 winner in the commu-nity agency category is Melvyn Martin,founder, former president and a currentdirector of the Canadian Reflex Sympa-thetic Dystrophy (RSD) Network. RSDor complex regional pain syndrome(CRPS), as it is also called, is a chronicpain condition with disabling symptomsthat vary from person to person. Ac-cording to Michelle Huibers, currentpresident of the Network, “Mel is oneof the very few advocates for ReflexSympathetic Dystrophy in Canada andhas suffered with RSD for many, manyyears. … He continues to inform othersabout recent research, clinical trials,[and] new and old treatment options.He has worked tirelessly to promoteunderstanding of this disorder. Some ofhis accomplishments have been: theprovince of BC recognizing July as RSDAwareness Month, organizing andmanaging an online support group ofnearly 150 members with twice weeklychats, annual conferences, [and]fundraising for families with childrenwith RSD.”

This year’s winner in the healthcare category is Agnes Bauer. MsBauer recently retired from her work asa community health nurse with HealthServices Community Living. She was

nominated by Ross Bailey and RichardWielgosh, participants in the Develop-mental Disabilities Association (DDA)Main Street Drop-In Centre. Theywrote, “She was a very patient, kind-hearted and thoughtful nurse. She didthings out of her way for us. She willbe greatly missed.” Terry Schenkel,assistant director of DDA’s FamilySupport and Outreach, wrote: “She isknown for her dedication, knowledgeand compassion.” Doug Lang, whoworks with the DDA CORE Day Pro-gram, wrote on behalf of the COREstaff, “… Agnes has always broughtprofessionalism with a difference. Shecares. She exudes positive spirit andgoodwill. She truly is a nurse, in thebest sense of the word. She has ourlove and respect.”

Congratulations to Mr. Martin andMs Bauer. You are inspiring examplesof our vision of accessible healthinformation and services for everyone.�

Personal InjuryDisability InsuranceMental Health Law20+ years acting for plaintiffsRespect, caring, good resultsFree initial consultation

700 - 555 West Georgia Street, Vancouver, BC V6B 1Z6tel: 604-602-1040 • fax: 604-602-1030www.haymanlaw.com • [email protected]

FAITH E. HAYMAN*

TRIAL & APPELLATE LAWYER * law corporation


In October 2005, the Supreme Courtof Canada rendered its decision inthe cases of Hilewitz v. Minister of

Citizenship and Immigration and deJong v. Minister of Citizenship andImmigration. The decision is a victoryfor people with disabilities and theirfamilies, and establishes thatimmigrants with disabilities canbecome valued members of Canadiansociety.

Justice Abella, writing for themajority of the Supreme Court, notedthat Canadian immigration policy hasapplied “exclusionary euphemisticdesignations” that concealed preju-dices about people with disabilities.The Court directed that Canada Immi-gration must conduct individual assess-ments of a family’s immigration appli-cation and, as part of this assessment,immigration officials should considerthe resources, time, personal andfinancial supports, as well as commu-nity supports, that families are able andwilling to provide children with disabili-ties.

The Hilewitz and de Jong caseswere launched by two families whowish to immigrate to Canada. Bothfamilies were found to be “desirable”immigrants, but their applications weredenied by Canada Immigration–be-cause each family includes a child withan intellectual disability. Canada Immi-gration refused their permanent resi-dency applications on the grounds thatthe children might cause “excessivedemands” on social services.

ARCH: A Legal Resource forPersons with Disabilities representedthe Canadian Association of Commu-nity Living (CACL) and Ethno-RacialPeople with Disabilities Coalition ofOntario (ERDCO) before the SupremeCourt of Canada in both cases. ARCHargued that a fair and respectful as-sessment of eligibility for permanentresidency under the Immigration andRefugee Protection Act must be in linewith the equality values of the Cana-dian Charter of Rights and Freedomsand international human rights princi-ples. Prospective immigrants should beevaluated on a case by case basis withconsideration given to their individualneeds and potential contribution toCanada, as well as family and commu-nity contributions.

The CACL and ERDCO intervenedin these cases to draw the SupremeCourt’s attention to the fact that peoplewith disabilities are being systemati-cally discriminated against by beingdenied admission to Canada based onnegative stereotypes. Visa officers relyon the recommendations of medicalofficers to determine if people withdisabilities will make “excessive de-

Court makes landmark rulingon disability and immigration

The decision is a victory forpeople with disabilities and theirfamilies, and establishes thatimmigrants with disabilities canbecome valued members ofCanadian society.

thank youBCCPD wouldlike to thankLohn CaulderCharteredAccountants fortheir generousdonation ofoffice supplies.Their supportis muchappreciated!


mands” on Canadian social services.These medical officers base theirrecommendations on a medical diagno-sis, rather than considering the “wholeperson.” They do not consider what thecost of needed services would be orwhat a “reasonable demand” might be.Canadian immigration policy, for exam-ple, does not exclude immigrants withhigh-risk behaviours, such as heavysmoking or participation in extremesports.

The CACL and ERDCO pointed outthat Canada Immigration fails to con-sider the positive contributions thatpeople with disabilities make to soci-ety, and the important role that familiesand communities play in providingsupports to people with disabilities.Canada offers all new immigrants abroad variety of services and supportswhich are recognized as necessary tofacilitate the integration of newcomersinto their communities. The CALC andERDCO contended that it is inequitableto treat immigrants with disabilitiesdifferently, and that immigrants withdisabilities should have access tosimilar supports and services thatfacilitate their inclusion in society.

The CACL and ERDCO are pleasedthat the Supreme Court of Canadadirected that Canada Immigration mustnot resort to a “cookie-cutter methodol-ogy” that simply looks at the immi-grant’s disability diagnosis. �

in memoriamBarbara Rosemary ParsonNovember 28, 1930 - October 12, 2005People with disabilities lost a great champion re-cently with the passing of Barbara Parson. Despiteseveral years of debilitating health problems, herenthusiasm and commitment to others neverdimmed.During her career, spanning over 40 years as anOccupational Therapist and as a dedicated volunteerfor many community projects, Barb was a forward-thinking advocate for the creation of independentliving solutions. As a consultant with VancouverContinuing Care and then a volunteer upon retire-ment, Barb was especially passionate about thecreation of accessible housing projects. Serving asa board member with the BC Paraplegic Association(BCPA) since 1998, Barb was instrumental in thedevelopment of Lions Millennium Place, providingpermanent accessible housing and transitionalsuites for individuals involved in rehab programs.She also contributed her expertise and many, manyhours toward the creation of such groundbreakinginitiatives as the Creekview and Noble House Co-operatives. As a member of the Steering Commit-tee for the Provincial Respiratory Outreach Program,Barb worked closely with many organizations in-cluding BCCPD and BCPA to create an outstandingservice solution for people requiring assistedbreathing.Throughout her life, Barb always approached aproblem from the human perspective, leaving atremendous legacy of caring and community in-volvement for others to follow.


Life changed for the Rossiter family 10years ago when 21-year-old Blakesuffered traumatic brain injury whenthe Honda Civic he was riding in was T-boned by a truck at 12th and Granvillein Vancouver.

“Blake was pinned inside thewreck, the impact caused an ‘earth-quake’ in his brain, he had swallowedhis tongue, and he was actually dead atthe scene,” recalls Blake’s father Mike.“He survived because of a number ofcircumstances: a passenger in theother vehicle pulled his tongue out sohe didn’t choke, paramedics were nearby, the firehall a block away had thejaws of life, and when he arrived atVGH, only a few blocks from the acci-dent, a neurosurgeon was on duty.”

His family, notified at their homein Terrace, flew to Vancouver to beginthe ongoing process of learning torelate to the new person their sonBlake had become. Gone was theindependent, carefree, gregarious 21-year-old who had left home to pursue acareer as a musician. The accidentchanged Blake’s life and that of hisentire family forever.

“We had lived in Terrace for morethan 20 years,” remembers Mike.“Both our kids grew up there. I had asuccessful printing business. But wenever really lived there again after theaccident. We moved to Vancouver andour whole focus became Blake and hisneeds.”

The first part of the journey wasthe easiest in some ways. During his

three months in Vancouver GeneralHospital and the following four monthsin GF Strong Rehabilitation Centre,Blake had “superb services.” When hewas discharged from GF Strong, Blakeentered King Edward House, a grouphome for brain injury survivors.

“One side of his body was like hehad had a stroke and he couldn’t standindependently,” says Mike. “He hadshort-term memory loss and speechproblems. King Edward was a safeplace for him and he was learningsome skills. But, he was just comingout of a fog and he had a lot of anger.He didn’t talk for the first six months–he would show emotion and blink, buthe didn’t talk.

The group home was expensive at$6000 a month. And Blake’s wheel-chairs cost $11,000–he’s on his fourthchair now. “We had to pay for any extraservices because he wasn’t at GFStrong any more. Our money was gonein a year.”

In the meantime, Mike travelledback and forth to Terrace wrapping up

TheaccidentchangedBlake’s lifeand thatof hisentirefamilyforever.

by Jo Dunaway

Blake and his father Mike cycling at Kits Beach

Circles of support


his business, and Blake’s mother andyoung sister shouldered most of theresponsibility for advocating for Blake.“His mother became an absolutelytenacious advocate,” remembers Mike.“She went after every service thatcould help him.”

Nineteen months after his acci-dent, Blake was back in the communityliving in a subsidized wheelchair acces-sible apartment near Granville Island.“This was Blake’s choice,” says Mike.“He had always been very independ-ent–it’s a part of his personality that Ihave always been proud of. He spent afew weeks with us in the family apart-ment, but he wanted his own place.”

Blake’s community came togetherto support him. “The people in Terraceraised $20,000 for Blake in one night,”says Mike. But there were losses too.“His old friends sort of disappeared–they just didn’t have the tools to copewith the new Blake. He was lonely anda little delusional. He would imaginethings and fight with his neighbours. Hecould pull himself out of bed and dressone-handed and get himself on and offthe toilet. But it was a real eye-openerfor us all–realizing what a difference the24-7 care at King Edward had meant.Now, living on his own, we were get-ting calls in the middle of the night todrive in from Steveston when he wouldfall out of his wheelchair or when heneeded help.”

For the next three or four years,Blake and his family carried on this waywith his parents trying to line up the

beach

services he needed and the funds for him to stay in KingEdward House when it wasn’t safe for him to be on his own.Along the way, Blake received a court settlement from theaccident.” The estimate for a lifetime of care after an accidentlike Blake’s is about $10 million,” says Mike. “Blake got abouta half million dollars. Fortunately, we had a great lawyer whospecializes in brain injury cases and we also got a profes-sional to help with financial planning and management. As hisparents, we were appointed official guardians by the court.”


Still striving for independence,Blake worked with a real estate agentto find his own apartment. He choseone in the renovated Fields Building onHastings Street in Vancouver. “Hisneighbours in the building are a won-derful mixture,” says his father. “Artists,musicians, older people, children. Theyare very friendly and understandingtoward Blake.”

Blake was receiving some com-munity services to help with cleaningand shopping, but there were timeswhen his family had to use privatefunds to get him back into King EdwardHouse when he wasn’t able to be onhis own.

We were watching him degener-ate,” says Mike. “His weight was upover 200 pounds and he had a lot of

James–a Registered Rehabilitationprofessional who works mostlywith people who have had braininjuries–has become one ofBlake’s main personal supports.


issues. He was needy and demanding.”That was when the Rossiters puttogether the circle of support fromcontacts and relationships they hadformed in their years of advocating forBlake. “We had met wonderful peoplewho cared about Blake.” Mike is grate-ful to two of Blake’s case managers,Brenda Rosenau and Susie Chant,Bonnie Wilson past-manager of GFStrong’s Brain Injury Program, andothers too numerous to name. “And, ofcourse, Blake’s mom, Lori, has been

has become one of Blake’s main per-sonal supports. His 22 hours a weekwith Blake are managed through KingEdward House with funding fromCommunity Health Care and Continu-ing Care Services, an arm of VancouverCoastal Health. Working as a team withBlake’s physiotherapist, James hascoordinated Blake’s daily program forthe past two and a half years.

“We have about three hours a day,five days a week together,” saysJames. “My biggest intervention wasto motivate him. He wanted to be moreindependent and that just wasn’tpossible if his physical condition wasso poor he had to keep calling for help.I started with him on exercises andmovements to strengthen his legs andhips. Once he started to see a differ-ence, he became very determined.Now he has no problem getting in andout of his wheelchair and bed, and hecan pick himself up if he falls.”

As Blake began to improve physi-cally, it affected his whole life, saysJames. “The success had a big effecton his personality. His depression,fixations and fears diminished and hestarted to feel good about himself. Thisconfidence made it possible for him toprogress in other areas. He has shortterm memory problems so I’ve workedwith him on techniques like keeping hisdaily appointment book and makinglists of things he needs to do each day.He is getting better at controlling theamount of money he has each week.”

Blake is very determined to beindependent, says James. He does hisown laundry and, although cooking isdifficult with one hand, James hasshown him how to prepare a numberof vegetarian dishes. To lose weight,

“We have about three hours a day,five days a week together,” saysJames. “My biggest interventionwas to motivate him.

his strongestadvocate. Weknew it wasessential to buildthese relation-ships. We broughttogether a group–like a circle ofcaring friends–todevelop a planuniquely designedfor Blake. And thiswas how we gotJames.”

James–aRegistered Reha-bilitation profes-sional who worksmostly withpeople who havehad brain injuries–

Circles of support, continued from previous page


Blake decided to cut the pastries andpizza he loved out of his diet and tapednotes to himself on his fridge. He lost30 pounds in three months.

“The physical improvement ismost noticeable,” says James. “ButBlake has taken control of many areasof his life.”

These days when Mike sees hisson Blake wheel up Commercial Driveto his favourite coffee bar, he can’tbelieve what Blake has achieved withthe support of James and others. “It’s ahuge change from the 200-pound,unhappy guy that we had been dealingwith.”

His now trim, 170-pound son nolonger calls to be helped back into hiswheelchair. His love for music hasrekindled and he has begun playing hisguitar with a music therapist, an exer-cise that is also beneficial for the spas-ticity in his hands. “He’s a differentperson,” says Mike. “Instead of beingneedy and demanding, he calls familymembers to see how we are. He lovesgetting out and meeting people. If youmet him, the first thing you’d think ishow charming he is.”

Mike is adamant that Blake wouldnot be progressing this way if it weren’tfor the determined and persistentadvocacy work by his family and therelationships that they have built with avariety of caregivers and professionals.“Those relationships are absolutelyessential. You have to put together thepieces and always be looking for theservice or support that will help theperson move forward.”

Mike believes that there could bemore efficient ways of using funds andservices. “It seems that a lot of the

funds and programs are concentrated in the very early days.Many people, like Blake, just aren’t ready at that point tomake the best use of them. Everyone unfolds from a trau-matic experience at their own rate, so they will need particu-lar services at different times. Blake wasn’t receptive tosome of the intervention and therapy until two or threeyears after it was offered.”

“The success had a big effect on hispersonality. His depression andfixations and fears diminished and hestarted to feel good about himself.”

DEAR EDITOR:Great job with your last edition (DisabilitySupports: Equipment and Assistive Devices,Sept/Oct 2005). There was lots of important andvaluable information on the equipment situationin BC and Canada. A Look Back, on the history ofthis issue, was interesting and the personalstories, Living at Risk, powerful. They mirrormuch of what we hear on a day-to-day basis. Ilook forward to the next edition.HEATHER ARCHER,EXECUTIVE DIRECTOR, PEOPLE IN MOTION

KAMLOOPS, BC

Mike has joined with psychologistLynne Mann to develop written materi-als and videos about caring for peoplewith brain injuries. For more informa-tion, go to www. livingwithbraininjury.com. He also recommends the Trau-matic Brain Injury Resource Centre atwww.braininjuryresources.org. To beplaced on the mailing list for the news-letter Headline, contact Mike [email protected]. �


by Christine Gordon

In March of this year there was a bitof good news for people with

disabilities who use home support,including the Choice in Supports forIndependent Living (CSIL) program,and who work or plan to work in thefuture. The Cabinet passed an Order-in-Council amending the regulation foruser fees for home support which willlimit the amount of fees that can becharged to people between the ages of19 and 64 who have earned income.

The Canada Health Act protectsCanadians who are receiving medicalcare from user fees, but continuingcare, which includes home supportservices as well as residential facilitycare, has no such protection. User feesare applied according to income andthey can rise as high as $67/day. Theincome that is used to calculate userfees is based upon specific informationfrom the income tax form and everyrecipient of home support must giveconsent for the Ministry of Health toaccess this information or they risklosing their continuing care services.

For working people with disabili-ties who need home support, the userfee has been a strong barrier to em-ployment. As soon as an individualstarts to earn income, the user fee isapplied and every time there is anincrease in income the fee escalates.This has meant that many people whodepend upon home support haverefused employment or promotionsbecause any financial gains that theymight have made could be wiped outby user fee increases. People who areworking have not been able to coverthe costs of their disability supports

because of the fact that they must payuser fees.

Although the user fee has beenidentified as a barrier to employment inmany reports to government over thelast decade, no action has been taken.However, beginning in 2003, deter-mined efforts were made by a smallgroup of consumers of home supportto resolve this situation.

After many meetings and thesupport of Katherine Whittred, thenMinister of Long Term, IntermediateCare and Home Support and ColinHansen, then Minister of Health Serv-ices, several options for change wereput forward.

The process of moving theseoptions through the channels of delib-eration was slow and sometimesthreatened to stop altogether. How-ever, the consumers were vigilant inmonitoring the process and sustainingtheir advocacy when the governmentengines stalled.

The option that was accepted bythe Cabinet and passed by Order inCouncil on March 18, 2005 amends theContinuing Care Fees Regulation. Theregulation now permits home supportusers between the ages of 19 and 64years of age who have earned incometo increase their earnings exemptionsfrom the current $15,000 for individualsand $25,000 for couples to $25,000 forindividuals and $50,000 for couples. Inaddition, there will be a ceiling on userfees so that home support clients,including CSIL users, who are aged 19to 64 and who have earned income willpay no more than $300/month in userfees.

The regulationnow permitshome supportusers betweenthe ages of 19and 64 years ofage who haveearned incometo increasetheir earningsexemptions.

Good news on user fees


s u b s c r i p t i o n f o r m

Privacy Statement The BC Coalition of People with Disabilities (BCCPD) respects and upholds an individual’s right toprivacy and the protection of their personal information. The BCCPD is committed to ensuring compliance with BritishColumbia’s Personal Information and Protection of Privacy Act (PIPA). The BCCPD will inform people what personalinformation it collects about people and why. It will store information securely and identify who has access to theinformation it collects. It will inform people what information will be shared, with whom, and why. BCCPD PrivacyOfficer: Mei Ng (604) 875-0188 Alternate: Jane Dyson (604) 872-1278 Email: [email protected]

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Local health authorities across theprovince should have been in touchwith all of the eligible home supportusers in order to recalculate their userfees based upon the new formulaeffective from March 18, 2005.

With this change, the BritishColumbia government has recognizedthat working people with disabilitiesneed the opportunity to have a level

playing field that will enable them, likeall other British Columbians, to usetheir earned income to meet theirneeds and to plan for a secure future.

As this issue of Transition demon-strates, personal support is a disabilitysupport. It is an essential prerequisiteto full participation by people withdisabilities. Reducing user fees is onesmall step to recognize this fact. �


We have reported on the work of theHepatitis C Compassion Umbrella ofCanada (HCCUC) campaign regularly inTransition. The BC Coalition of Peoplewith Disabilities is a founding memberof this group that is working to expandthe federal government’scompensation program so that peopleinfected with Hepatitis C throughtainted blood before 1986 and after1990 are included. Under the terms ofthe current Settlement Agreement,only those infected after 1986 andbefore 1990 are eligible forcompensation.

To date 390 groups have en-dorsed the campaign, and the numberof supporters continues to grow. Thislevel of support is excellent and we

recently had some more good news. InNovember, a Memorandum of Under-standing (MOU) was signed by HealthMinister Ujjal Dosanjh and representa-tives for people excluded from thecurrent Settlement Agreement. TheMOU commits the federal governmentto provide compensation to this ex-cluded group.

“The Government of Canadarecognizes the tremendous burdenHepatitis C places on the lives ofpeople infected and on the lives oftheir families,” said Minister Dosanjh.“By entering into this MOU, both sideshave made a clear commitment to theongoing negotiation process. Thefederal government will compensatethe pre-1986/post-1990 class becauseit is the right and responsible thing todo.”

Negotiations will continue on theterms of the final settlement includingthe eligibility requirements and com-pensation amounts. This process will,unfortunately, take several months.

This is an excellent step forwardand is in large part due to HCCUC’sfounding members and the nearly 400groups that have supported the cam-paign to have the Hepatitis C Settle-ment Agreement expanded. Theirsupport and persistence made thishappen.

But the campaign is not won yet.We will continue urging the govern-ment to progress as quickly as possiblewith the negotiations so that peoplewith Hepatitis C can finally receive thecompensation they deserve.

Hepatitis C Updateby Jane Dyson

An excellentstep has beenmade in victimcompensation,but it’s not overyet .

Transition AdManagerAnneke Wijtkampis Transition’s newAd Manager. Shebrings with her adiverse skill set inthe areas ofmarketing andpublic relations. She is looking forwardto creating strong partnerships withTransition advertisers and sponsors.

If you would like to know moreabout Transition’s advertising opportu-nities, contact Anneke by phone at604-812-8149 or email her [email protected].


Transition would like to thankthe many people who helped prepare this edition.A big thank you to the people who gave their timegenerously to talk to Jo Dunaway about personalsupports: Mike Rossiter, John Neumann and EddyMorten [thanks to interpreter Brenda Erlandson too!].And thanks to our contributors: Laurie Beachell,Christine Gordon, Shelley Hourston, Linda Delparteand Jane Dyson.And finally, a big thank you to our advertisers KenLagasse, Chartered Accountant; SAFER; and, FaithHayman, and our Partial Sponsor CUPE.

Hi! My name is Mark Riley. The otherKids in the Kids on the Block puppettroupe asked me to tell you about ourfirst-ever appearance at the VancouverFringe Festival. It was so much fun! Wedid six performances and made a lot ofnew friends, big and small.

I think the other Kids chose me asspokesperson because I was the firstKid on the Block. I was created over 25years ago to “introduce” special needschildren being mainstreamed intoregular classrooms to the childrenalready there. I’m an 11-year-old boy andI have Cerebral Palsy. I use a wheel-chair–my “cruiser”–and I wear a crashhelmet to protect my great brain.

After I was a big hit in the class-room, lots of other puppet Kids werecreated. One of my best friends isRenaldo who is blind. And Ellen Janewho has Down Syndrome. We reallylike going to schools and showing thekids that we’re just regular kids too. Wedo skits that look at the ways we aredifferent and the ways we are the sameas other kids. Sometimes we’re prettyfunny, if I do say so myself. The kids inthe audience can ask us anything theywant to know.

There are more than 1000 Kids onthe Block puppet troupes all around theworld. I’m a member of the Vancouver-based troupe, coordinated by the BCCoalition of People with Disabilities.And, we don’t just perform at schools.We like to perform at meetings, confer-ences and other events. You can call usat 604-875-0188 or [email protected] ask for our Coordinator, Olive.

Me, Mark Riley, getting a donor chequefrom Vancity’s representative PamelaRamrup. She was REALLY nice!

The Kids are a hit at the Fringe!


Job Coaching as a disability supportfirst became popular in the 1970s inNorth America as a technique toprovide initial support for people withlearning difficulties to successfully gainand maintain competitive employmentopportunities. POLARIS EmploymentServices Society began offering jobcoaching supports in 1979.

Job coaching is both an art and ascience. A successful job coach knowsthat the person being supported mustdirect the nature and amount of sup-port provided. And a coach knows theyhave done a great job when the em-ployer forgets a job coach was part ofsupporting the new employee to besuccessful. In that case, the co-work-ers see the person as just anotherteam member contributing to theworkplace. The team sees the skillsand abilities, the personality and theuniqueness of the new co-worker.

Sometimes a worksite will assigna mentor for the new employee, justas they do for any other employee.And the new employee knows thattheir boss is the workplace supervisor,not their coach.

The job coach’s role varies withevery worksite and every person whoseeks the support. The coach canassist on or off the jobsite. For somepeople, the employer may never knowabout the job coach. Some typicalsupports might include:

• arranging transportation routes to/from the worksite

• checking on clothing, suitablefootwear or other work tools

• determining or arranging for anyneeded equipment or assistivedevices

• supporting the person duringcorporate orientation and trainingsessions on policies, proceduresor specific skill training sessions

• clarifying performance expecta-tions of quality and quantitycreating memory aids if needed

• organizing the physical workspaceand workflow for maximumresults

• coaching communication skillsneeded in the worksite

• practising duties and specificwork skills or routines

• preparing an individual for per-formance reviews

• supporting the development ofpositive workplace relationships

• decreasing coaching to off-sitesupport time and monitoring ofprogress

• being a cheerleader and encourag-ing people to see their ownstrengths and abilities

What do customers say about jobcoaching?Matthew: “I don’t need my job coachany more. I know my job. I know myboss. I know my co-workers.”

Sandra: “My boss says I am thebest at my job and I know I have tothank my job coach for helping melearn the right way to do my job.”

Wendy: “The coach helped me toexplain my job responsibilities to my

A successfuljob coachknows that theperson beingsupported mustdirect thenature andamount ofsupportprovided.

The support of a job coach

by Linda Delparte


family. My family helps me celebratemy successes.”

Ken: “You [the job coach] arehelping me to find the words I need totell my boss about what work I finishedtoday.”

What do businesses say about jobcoaching?Winners: “The extra support from thejob coach gets people started quicklyand picks up the pace in learning thepolicies and procedures of ourcorporation.”

Liquidation World: “The job coachhelped our company carve out dutiesthat best suited our new employee andour work demands.”

Royal Bank: “The job coachingservice is unique and valuable to ouroperation. We had to re-locate oneemployee due to changing demands inour company. The job coach came inand helped us to find new duties,retrain and upgrade our employee’sskills.”

Real Canadian Superstore: “It wasa coordinated effort with our team ofmanagers, the new employee and thejob coach to assist the person to learnto perform their duties in an exceed-ingly busy store.”

The BCCPD has established the Mary WilliamsMemorial Core Volunteer Fund to support andexpand our core volunteer program. BCCPD’s corevolunteers provide crucial support to our manyprograms and Transition magazine.

We gratefully accept donations to the Fund; a taxreceipt will be issued for all donations of $10 ormore.

“There is life after disability. I’m not myspinal cord injury and I’m not my wheelchair. I’mstill Mary. I have a great quality of life; not just agood one, but a great one.”Mary, April 2001

� Please accept my tax-deductible donation of $________to the Mary Williams Memorial Core Volunteer Fund.

� Please call me for a credit card donation.Tel: _________

Name _____________________________________

Address ___________________________________

City___________________ Postal Code __________

Thank you for supporting the Fund.

Mary WilliamsMemorial CoreVolunteer Fund


“My boss says I am the best at myjob and I know I have to thank myjob coach for helping me learnthe right way to do my job.”


What is new about job coaching?There is a huge growth in Managersand Chief Executive Officers paying forjob coaching support to improve theirown workplace performance. Privatejob coaches have been contracted bymany Fortune 500 firms to help eachmanagement team member to achievecorporate and personal goals.

Job Coaching as a DisabilitySupport: What is missing?Not unlike other disability supports, jobcoaching is not readily available.Typically, the federal governmentthrough Services Canada sees jobcoaching as something provided duringthe first 12 weeks of work–essentiallyduring the 3 month probation period.The provincial government, through theEmployment Program for Persons withDisabilities, makes job coachingavailable for a few hours at the start ofa job or not at all. For someoneneeding job coaching to keep a job,funding support is rare.

Businesses are engaging in morementoring and buddy systems for thesuccessful orientation of any newemployee. However, this does noteliminate the need some people willhave for more support when learning anew job, or retraining to keep a currentjob or to expand their workplace re-sponsibilities and advance in a firm. �

Thank you to the funders of our CPPD program:the BC Ministry of Employment and Income Assistance

Disability BenefitsCPPD Advocacy Access

Unlike provincial disability benefits, CPPD benefits arenot asset tested: there is no limit to the personalassets you can have. Receiving income from othersources (with the possible exception of employmentincome) will not disqualify you from receiving CPPD.

Unlike provincial disability benefits, you will keep yourCPPD if you become involved in a dependentrelationship, e.g. if you get married.

Most people receiving provincial disability benefits willstill get a top-up from the Ministry. This means you willnot lose your medical coverage and annual bus passwhen you qualify for CPPD.

You do not have to apply for CPP early retirementbenefits at age 60 if you are already receiving CPPD.

You can attend school or do volunteer work withoutjeopardizing your CPPD.

If you move to another province your CPPD will gowith you.

CPPD is taxable, but recipients can apply for theDisability Tax Credit.

Phone Advocacy Access for one-on-one assistancewith CPPD appeals, tribunals and Pension AppealsBoard cases.

Local calls: 604-872-1278Toll-free: 1-800-663-1278TTY: 604-875-8835

� Are you a Ministry of Employment and IncomeAssistance client?

� Have you recently been denied CPP Disability?� If so we can help you to appeal.

About CPP Disability benefits

Job coach, continued from previous page

Linda Delparte is Executive Director of POLARIS EmploymentServices Society. For more information, contact Linda at 205-5066 Kingsway, Burnaby, BC V5H 2E7, phone: 604-430-1557, fax: 604-430-8693 or email: [email protected].


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Any donation, small or large, willmake a difference–donations over $10are tax deductible.

Dear Transition: How do I support thee?Let me count the ways...

Privacy Statement: The BC Coalition ofPeople with Disabilities (BCCPD) valuesand upholds citizens’ right to privacy andthe protection of their personal informa-tion. Our Privacy Code is available on ourwebsite at www.bccpd.bc.ca or from ourPrivacy Officer: Mei Ng (604) 875-0188 orAlternate: Jane Dyson (604) 872-1278Email: [email protected].

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Please make cheques payable to BCCPD. Send payments andthis form to BCCPD at 204-456 W. Broadway, Vancouver, BC V5Y 1R3.You can also donate on line at www.bccpd.bc.ca.

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BC Coalition of People with Disabilities,Suite 204, 456 West Broadway, Vancouver BC V5Y 1R3(604) 875-0188 • fax (604) 875-9227 • tty (604)[email protected]

Transition would liketo thank the Canadian Union of

Public Employees (CUPE) –Partial sponsors of this edition.

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